I am forwarding this message to the list at the request of its
author. Jack Owens, Idaho State Univ. <owenjack@isu.edu>
------- Forwarded Message Follows -------
Date: Fri, 20 Oct 1995 18:39:17 +0800
To: OWENJACK@FS.isu.edu
From: kjkhoo@pop.jaring.my (KHOO Khay Jin)
Subject: Re: Patenting of biological material from indigenes
The following report from Nature, 5 Oct 1995, while not necessarily
negating Friedlander's response - indeed, may add further substance to it
as per RAFI's influence, may interest those who have followed this matter.
There is also an editorial on the matter in the same issue of Nature
(p.372).
One point, though: a criticism of HGD has been its lack of expression of
concern over the extinction of indigenous groups. However, it might be
noted that such an expression of concern on HGD's part may well make their
project unwelcome to many governments under whom many of these indigenous
groups live. This may substantiate a charge of self-interestedness on HGD's
part. On the other hand, if collection of this material is crucial to
future knowledge and understanding, then perhaps HGD's reticence at open
expression of concern may well be justified.
At the same time, the issue of intellectual property rights as well as how
the project will benefit indigenes has to be spelt out clearly and
practically. It has happened all too often that claims of benefit vanish
into thin air on closer examination.
Finally, it might be pointed out that in all likelihood some of this sort
of work, i.e. collecting biological material from indigenous peoples, is
going on quietly. This is likely to be more both more insidious and of no
benefit to indigenes. On this score, HGD, by being open about their
project, has to be commended. At least they have given everyone a chance to
air their views and objections.
KHOO Khay Jin
Kuching, Sarawak
------------------------
Genetic diversity proposal fails to impress international ethics panel
Paris. A multimillion-dollar project to study genetic variation in
populations worldwide - the Human Genome Diversity Project (HGD) - appears
unlikely to receive the endorsement it has been seeking from the United
Nations Educational Scientific and Cultural Organization (Unesco).
The project - in which DNA would be collected from around 25 individuals
from about 500 of the 5,000 or so different ethnic groups - is the
brainchild of Luigi Luca Cavalli-Sforza, a renowned population
geneticist at Stanford University in California. Knowledge of the
origins of populations would have "enormous potential for illuminating
our understanding of human history and identity", and provide
information on the genetic basis of predisposition and resistance to
disease.
The project, which it is estimated would cost around $5 million
annually, has been backed by the Human Genome Organization (HUGO). But
it has obtained little funding, partly because of controversy about its
procedures and implications. Its supporters have been lobbying Unesco to
set up an ethics committee to oversee the project, in a bid to improve
HGD's image and to increase its prospects for funding.
But at a meeting of Unesco's International Bioethics Committee (IBC) in
Paris last week, a working group on population genetics set up by the
committee strongly criticized the HGD, and recommended UN organizations
not to endorse any individual project in this area in order to
"safeguard" Unesco's "independence, neutrality and credibility". One
Unesco official also says it rejected a separate request from HGD for
direct funding.
The working group acknowledged the validity of the project's scientific
goals. But it also endorsed criticisms by indigenous peoples, the main
target of HGD. The group said, for example, that the project needs to
clarify how - if at all - intellectual property rights would be claimed
on biological material derived from populations.
Indigenous groups are angry that the US Department of Commerce has filed
patent claims on cell lines taken from indigenous people from the
Solomon Islands. The islands' government has protested. But Ron Brown,
the US Secretary of Commerce, replied last year that the origin of cells
was irrelevant to the patent application.
The working group also asked HGD, which is managed by a subcommittee of
HUGO, to "formulate concretely" its general claims that the project
would benefit local populations. HGD's claim that it will lead to the
development of local research laboratories, for example, needs to be
clarified so that "it becomes obvious how this would happen". The
working group also wants confirmation that HGD would not seek commercial
funding, despite its fragile financial situation, and called on HGD to
include indigenous peoples in all stages of the project.
The long list of criticisms reflects a general feeling at the meeting
that the enthusiasm of the project's supporters for scientific results
has led to the neglect of wider issues, in particular human rights. The
working group pointed out that although HGD has "expressed urgency" in
collecting samples from peoples in danger of cultural and physical
extinction, it had not expressed concern about their extinction per se.
Indeed, speaking at last week's meeting, Debra Harry, a Paiute North
American Indian who works with the Indigenous People's Biodiversity
Network, said that genetic research is "not a priority for indigenous
peoples". She pointed out that basic human rights, such as access to
better health care, are a better guarantee of their well-being and
survival, and added: "They've come to take our blood and tissues for
their interests, not for ours."
Harry invoked the 1964 Helsinki Declaration - "in research on man, the
well-being of the subject takes precedence over science and society" -
to argue for a halt to HGD on the grounds that indigenous peoples feel
they will not benefit from it. Indeed, she claimed that information from
HGD would in fact increase discrimination against indigenous peoples.
Cavalli-Sforza has argued that HGD would reduce the risk of racism by
showing that the notion of race is flawed. But the IBC group described
this as the "most debatable" claim of the project, arguing that the
prejudice that gives rise to racist and eugenic attitudes tends to
pervert scientific results to its own ends. Genetic reductionism, argued
many at the meeting, represents a threat to those mythologies of human
origins that are different from those of the dominant world cultures.
Moreover, the working group argues that opposition is based upon more
than misunderstandings of the scientific aims or anti-science attitudes,
but "is a clash of philosophy and cultura insight". Harry, for example,
says that "genetics is a violation of our ethics, it attacks our
culture's world view". She adds: "We don't view our genes as protein
actions ready to be interpreted; for us our genes are sacred."
One ethnological researcher at the meeting urged biologists to learn to
"respect community rights", adding that their discipline has become
accustomed to working under enormous constraints. These include lengthy
approval procedures, and making notes available to the groups being
studied.
Cavalli-Sforza, who attended last week's meeting, said he welcomed the
committee's analysis, and "shared their concerns". HGD, he added, was
drafting protocols that would go "even further" than the committee's
recommendations.
But he dismissed the claims concerning the project's risks as
"exaggerated", and continued to attribute them to misunderstanding. "I
have become used to being called a planner of genocide and of being
accused of economic interest," he says. "My main aim is to defend the
project and defend science." - Declan Butler
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